Tag Archive | Open Heart Surgery

It’s always with a bit of fear & trepidation that I ever decide to engage the special needs arena more directly than daily life requires, especially when it’s mandatory (like IEP time). Well, this short article came into my inbox and some of her thoughts below really resonated…

I can’t do this; be a wife, a mom, a nurse and keep my tears behind dry eyes. I had dreams of doing things in the medical field a lifetime ago. That didn’t happen for reasons upon reasons. But here I am, working (and living) in the medical field every day. I didn’t expect my patient would be my own child. Now that those long-lost dreams are alive and well in my everyday life all I can think of every moment is, “Please God, I can’t do this.”

The bolded part in the above quotation is what got me back typing away here. Through a series of seemingly random events I studied and graduated University with a Pre-Med Degree (BS, Bio-Medical Chemistry). I did take the MCAT (Medical College Admissions Test) and did marginally well but just never applied to Medical School. At that time I was getting burned out on an extreme science emphasis like my basically Chemistry Major/Biology Minor Degree had demanded; I needed a break. Being pretty eclectic in my interests & “motivations” (if one can even say I have the latter!) I was just not really interested in then pursuing medicine right out of my undergraduate program; I ended up pursing Christian Counseling instead…

The ironic thing is that I partially made this decision because I “wanted to have a life” and thought the extensive studies and training involved in Med School would mean many years before I would get much reprieve or enjoyment out of living. Amazingly, before a decade had passed, I too, like the mom above, was facing the most challenging of all patients, my own extremely complex special needs child, and truly my life would never be my own again…

from a Bing.com image search for “sick child”

Frankly I don’t know how anyone copes with the challenges, upheavals, sorrows, rage, exhaustion, confusion, depression, isolation, and tediousness of it all without the Lord’s saving Grace & Peace! These extensive trials have driven our family to the Foot of the Cross time & time again. And even with His “Peace that passes understanding” there are many days when we just have to slog it out…& it ain’t pretty either!

from a Bing.com image search for “comfort in suffering”

I still honestly don’t know what to do with all the “stuff” that has been crammed down into my soul with minimal if any real “processing” time or resolution. It is difficult for me to make sense of some of those special needs experiences without some outlet for said processing–which is one of the reasons for the existence of this blog at all.

Only considering my “special” son’s particular needs, here’s some of what we’ve faced:

Living apart from my husband for 3 months during heavy season of stress

Inability to directly breastfeed my son due to his weakness, so nearly 3 months of pumping breastmilk for him to be gavage fed via a tube in his nose, or alternatively to feed his twin when we were apart because I was in the hospital with his brother around the clock…

Open heart surgery at 2 1/2 months & ~4 pounds; the night beforehand being the only time our entire immediate family was in one room together, as in I was preparing myself/us for the possibility that our son would die & that pre-op visit would be all the time that we ever had together as an intact family…

Relatively short time at “home”; Life threatening respiratory infection (RSV) leading to an across state ambulance ride and re-hospitalization, and the admission X-Ray revealing an unexplained broken rib so “formality” inquiries; he had a second RSV hospitalization when about a year old

Problems with hernias requiring near emergency surgery during the post-op phase from Heart Surgery

Visiting Nurses

Medicaid

WIC

County Health Departments

Numerous Medical Specialists with sometimes conflicting advice

In Home Therapy visits (PT, OT, Speech)

In Home Teaching, in three different cities

Preventive Care Services, support for a family in near crisis

Being written up in our local paper because of the uniqueness of our situation

Authorized coverage for respite child care so my husband & I could get a reprieve, but an inability to use this service because we couldn’t find anyone capable of handling Josiah’s needs and our other two or three kids…

Continuing to help him navigate the world, including processing why even though he and his twin brother are a minute apart in birth times their life experiences are worlds apart

from a Bing.com image search for “comfort in suffering”

Well, my oldest son has mentioned on a number of occasions how I “never use my education”, since I’m not currently in the workforce. It has honestly taken every aspect of what I’ve learned formally, inter-personally, spiritually, and experientially to navigate the extremely treacherous waters that Special Needs Parenting has led us through. Some doctors have kindly indicated that I have a virtual medical degree by way of this personal parenting experience. Whatever I have become, much of it is now attributable to being a Special Needs Mom. It has become a burden, a badge of honor/courage, and ultimately a blessing. In God’s Kingdom He brings Beauty for Ashes, Light from Darkness, and Hope beyond Despair!

Though I didn’t ask for this calling, as much as it lies within me, I try not to shirk the attendant responsibilities. We’ve spoken as a family on these matters a number of times and we all agree we wouldn’t change things, even if we could. As my eldest son has said, “Josiah is the heart of our family!” So we are Challenged, Confused, Cracked Up, and Comforted by his uniqueness. He still sees the Lord with “unveiled face”, being so pure of heart. The rest of us might be relatively normal by this world’s standards, but Josiah stands tallest and purest in the Kingdom of God! It is all of our privileges to walk along side of him in this crazy, painful, wonderful life…

I just read the post at the below site about the challenges one family faced surrounding church attendance…that seemed to be generated, in particular, by one church staff person being inflexible and unaccepting of their child’s unique quirkiness…

http://supportforspecialneeds.com/2016/02/10/when-church-special-needs-do-no-mix/“…we were so tired of fighting for the kids that our hearts weren’t in it to fight for this place; a place we should feel welcome no matter what. It’s exhausting fighting educationally, medically, mentally and socially and top that …We just couldn’t fight to stay in church. It shouldn’t have been, nor should it be that hard. As their parent, I take full responsibility for giving up that fight. I just couldn’t do it.”

I agree with the exhaustion statement above . Families facing complex special needs scenarios can be overwhelmed and even burned out because of the day-in and day-out battles they face on multiple fronts. Church should (theoretically) be a place where we can go and be accepted “warts and all” and where our children can be especially embraced in spite of, or even because of, their differences.

But, oftentimes church can be a battleground. There are a couple of posts at SpecialNeedsParenting.net that outline a pretty ideal scenario of love and acceptance of a very unique autistic young man in a church. Please see this story at these two links: http://specialneedsparenting.net/autism-church/ http://specialneedsparenting.net/autism-church-its-a-good-thing-part-ii/

Our family’s experience has been a bit more uneven than this. When our son with special needs was born we lived in Northern Michigan, about 3 1/2 hours North of the birth hospital. At that time I was staying with my parents in Metro Detroit with our just 2 year old son after having seen a high risk pregnancy doctor and being told of my twin pregnancy “we’ve got to get the little guy out before he dies” on a Friday, and being scheduled for a premature delivery on the Monday following. Both twins were needing to stay in the NICU before coming home. The basically “normal” baby (Brandon) came “home” (to my parents’ home) after 10 days in the NICU, but Josiah remained there for about 2 months before being transferred to the University of Michigan Hospital for Open Heart surgery.

My husband and I had been quite involved in our Northern Michigan church before becoming parents. We had been the youth leaders/pastors for a period of time and also both very active in the worship ministry. When it became known that Josiah would be having heart surgery both pastors traveled South to visit with him (and me) in his birth hospital. It was a fairly awkward visit as the senior pastor was visibly uncomfortable in the presence of this very small (about 4 pounds then, having been 2# 6oz at birth, a condition called IUGR–Intra-Uterine Growth Retardation, very small for gestational age) and sickly premature infant. They did ask how they could help our family and offered to stay with us at U of M during Josiah’s upcoming heart surgery, but I did not feel “safe” in their presence so declined this “service”. I suggested that they could have some families in the church either provide meals for my husband, or invite him over for a meal as he was living alone (in order to work) and coming downstate to be with his family each weekend. This resulted in one dinner invitation for my husband during that extended time of extreme stress and isolation.

Years later we ended up discussing that early time and how uncomfortable we were with how the senior pastor, in particular, handled us and our situation. There was something about things that never really sat right, though it was hard to pinpoint. Our friends had also been attending our church during that time and were quite close with my husband in particular (he and our oldest son had both participated in their wedding). They provided some needed perspective about how our “heart surgery baby” was being handled by our then pastor at that time. According to them he would brag about the small sick baby from his congregation, kind of like a feather in his cap about how he/the church were doing so much to “meet our needs”. Apart from that hospital visit (which was a significant drive and Not requested by us) and that one meal for my husband there was nothing done for us by our church…including during multiple surgeries and intensive home interventions from government program workers for about the next two years before we left the area. I forgot, the Senior Pastor did visit me and the boys in our home at one point, I’m not sure when, and asked what I needed. When I said that I could really use a friend he exclaimed (in seeming outrage) “I can’t get you friends!”, which wasn’t what I was actually saying. Needless to say, talking to pastors about “issues” has never been very high on my priority list (and perhaps I’m too picky in this arena given my background in Christian Counseling)…

In the early days after the twins’ birth, when we were finally all back in our own home I heard a very moving story on the local Christian Radio Station. There was a family that had given birth to a very medically fragile child and they had been surrounded by love and support from their natural and local church family. This involvement rose to the level of round the clock shifts to provide extra assistance during the early weeks, and perhaps even months, of intensive neediness. What was portrayed seemed so ideal and so far apart from our own experience that I was very saddened at that time by how unsupported we ended up feeling from our local church family (our natural family being hundreds of miles away and helping us with housing/babysitting during medically based visits).

Because of our son’s complex medical needs, which were all being treated and followed at U of M, a good 3 hours South of our then home, we began to explore the possibility of moving closer to this needed ongoing medical care. Ultimately my husband went through a job change that allowed him to work downstate and live in my parents’ home for about a year, commuting to our home for the weekends, while I stayed North with our three sons so that we could sell our home ourselves (For Sale By Owner). The boys and I would head South with their dad for any weeks where Josiah had medical appointments and return home the following weekend. This situation was extremely stressful for all involved and for the most part we had no support from our local church. I lived in extreme isolation during the weekdays, rarely leaving the house because of Josiah’s fragility and risk of infection, etc. In fact I was shocked to find out that the woman I considered my closest friend from that church had been attending a weekly bible study a few houses from my own, but she had never stopped in to see me or the kids nor to check on why we attended church so sporadically, if at all. That lack of attendance was due to the fact that Josiah contracted life-threatening RSV (Respiratory Synsichial Virus) and required lengthy hospitalizations for it twice in the first year of life–basically taking him out in public was risking his life.

When we finally accomplished moving the entire family downstate and got situated in our “new” home, we began searching for another church home. As the twins were now toddlers (2), our oldest son 4, and our daughter an infant this was an extremely challenging process. If we found a church that had sufficient nursery capacity they rarely, if ever, were able to handle the magnitude of Josiah’s behavioral or emotional needs for the duration of a worship service and either I or my husband would need to intervene with him, sometimes multiple times in one service (this was before we knew about “autism”, but even after such a diagnosis we had minimal autism treatment so it was more just an “ah ha” explanation for us about what was going on with him). This really meant very sporadic church attendance overall as it was very difficult to “get anything” out of a service being so distracted by Josiah’s needs. The magnitude of those needs was also a major reason why we sought the support and sustenance of a local church “family”, as a way to cope with the massive pressures of the special needs family’s life.

It was a number of years before we began attending our present church and we ultimately went there because it had a bit of a “comfortable old shoe” component to its ambiance for us. During Clarissa’s infancy I had attended a MOPS (Mothers of Preschoolers) program at that particular church and felt that it had a pretty welcoming atmosphere. Because of that positive MOPS experience, and because the church was pretty local and seemed relatively welcoming we eventually began attending more and more frequently.

Since our children were then mostly in their elementary years we were no longer battling the nursery situation. Also, this church has a fairly limited “Sunday School” type programming, so we often just kept Josiah with us during the service in order to minimize some of the upheaval. Josiah has always had a true worshiper’s heart for the Lord! This means that either in church or during times of spiritual meaningfulness (family devotions and/or communion, etc.) he was more attentive and/or more behaviorally appropriate than he might otherwise typically have been. That meant that at least sometimes he was appropriate to attend the kid’s programming, and having him included in some musical kids productions was a definite blessing.

Even though our current church home is relatively “special” friendly there are still glaring times of insensitivity that can be on display. A couple years back our daughter was nearly moved to tears while at a youth event when she observed how her special brother was not at all appropriately included in a physical activity. His processing challenges and poor coordination meant that he was rather bowled over and disregarded during a sporting event. Clarissa was very sad that the attending leaders were either unaware or unconcerned about how Josiah (and his sister) was being hurt by not being appropriately accommodated. It would be great if either of them would have been assertive enough to speak up and seek help during such difficult experiences, but that is unlikely to happen. That means that people in leadership need to develop increased observational skills and sensitivity and perhaps creativity in how they reach out to people and families that are “different” and who may need extra help, patience, or understanding…

Being able to reach out and embrace kids/adults with special needs and their families really should become a primary mission of virtually any local church. The uniqueness of the needs represented would mean that staff and parishioners would need to be especially sensitive to where a given family was in multiple domains. There could be great opportunities to reach out in service to such families who often face more than their “fair share” of crises and upheavals. Having a ministry targeting special needs families could mean a much more vibrant style of community outreach and Christian witness. The love and compassion, gentleness and patience, joy and peace, kindness and self-control that Should accompany the Christian life would be the ideal characteristics for people reaching out to special families to possess. Wouldn’t it be wonderful if the Lord would lay such a burden on the hearts of so many in ministry?

Until such a time as that ideal scenario presents itself, those of us who know the Lord need to allow Him to move in and through us in developing eyes, ears, and hearts of compassion toward one another…and especially to people and families that are often broken and hurting. And if you come from a special needs family it is almost certain that you bear burdens and wounds and need the love and tender mercy of the Lord poured out into your life. The author referenced at the beginning of this post took a long hiatus from church and didn’t really raise her kids much in the faith. Although she herself is attempting a return to church now, it is unclear what spiritual relationship her kids have–and those losses are at least partially attributable to an incredibly insensitive church leader who by her demeanor may have inflicted permanent damage on a vulnerable family…How Tragic!

May the Lord give His wisdom to His people that they/we as individuals and as local church bodies may open their/our eyes to the many needs around them/us represented by special needs families. May they/we choose to see and to give of themselves/ourselves in time, prayer, emotional support, or tangible means of assistance and so reach out to so many of the vulnerable, lonely, hurting, and fragile within our communities. Consider the Randy Stonehill song () below which beautifully portrays the need for each of us to be Christ’s hands and feet to a hurting world…Blessings to All, Valerie

RANDY STONEHILLWho Will Save The Children Lyrics

Cry for all the innocent onesBorn into a world that’s lost its heartFor those who never learn to dreamBecause their hope is crushed before it can startAnd we shake our fists at the airAnd say “If God is love, how can this be fair?”

But we are his hands, we are his voiceWe are the ones who must make the choiceAnd if it isn’t now, tell me when?If it isn’t you, then tell me whoWill save the children?Who will save the children?

We count our blessings one by oneYet we have forgotten how to giveIt seems that we don’t want to faceAll the hungry and homeless who struggle to liveBut heaven is watching tonightTugging at our hearts to do what’s right

And we are his hands, we are his voiceWe are the ones who must make the choiceAnd if it isn’t now, tell me when?If it isn’t you, then tell me whoWill save the children?Who will save the children?

As we observe then through our T.V. screensThey seem so distant and unrealBut they bleed like we bleedAnd they feel what we feel

Oh, save the childrenSave the childrenSave the children

Now we decide that nothing can changeAnd throw up our hands in numb despairAnd we lose a piece of our soulsBy teaching ourselves just how not to careBut Christ would have gone to the crossJust to save one child from being lost

And we are his hands, we are his voiceWe are the ones who must make the choiceAnd it must be nowThere’s no time to wasteit must be youNo one can take your placeCan’t you see that only weCan save the childrenSave the childrenSave the childrenPlease, save the childrenWill save the children?Who will save the children?

Follow me on Twitter @ValerieCurren

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